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Absence seizures in the GAERS model: subthalamic nucleus stimulation
Published in Hans O Lüders, Deep Brain Stimulation and Epilepsy, 2020
Alim-Louis Benabid, Laurent Vercueil, Karine Bressand, Maurice Dematteis, Abdelhamid Benazzouz, Lorella Minotti, Philippe Kahane
Karen Gale15 in Washington and Depaulis and Marescaux in Strasbourg,29 have shown that there is a nigral control of epilepsy. Injection in the SNr of GABA agonists or MNDA antagonists, as well as injection of GABA antagonists in the SC is able to induce an antiepileptic effect in several animal models, and particularly in the GAERS model. This suggests that the inhibitory-like effect of HFS applied in the SNr or STN would also have an antiepileptic effect. According to the parallel processing model,30,31 inhibition of the STN should induce an inhibition of the SNr, thus validating the use of HFS in the STN to obtain an antiepileptic effect.
Motor Neurone Disease and Spinal Muscular Atrophy
Published in John W. Scadding, Nicholas A. Losseff, Clinical Neurology, 2011
With the availability of the internet, many patients may already suspect the diagnosis prior to specialist review and it is therefore vital to explore the patient’s understanding and, indeed, misunderstanding, surrounding the diagnosis. For this reason, it is important that patients are seen in a timely fashion; the recommendation from the Motor Neurone Disease Association (MNDA) is that all patients are seen within 4 weeks of referral. It may be appropriate to discuss a potential diagnosis even prior to organizing investigations if the patient has concerns. Conversely, it is important to gauge how much information the patient really wants to receive; offering a prognosis based on statistics is rarely helpful for an individual. Regardless of their suspicions, receiving a diagnosis of MND is inevitably a devastating event and its handling invariably shapes the subsequent patient–doctor relationship.
Delivery of nutritional management services to people with amyotrophic lateral sclerosis (ALS)
Published in Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 2021
Vanessa Halliday, Nicolò Zarotti, Elizabeth Coates, Alexander McGeachan, Isobel Williams, Sean White, Daniel Beever, Paul Norman, Sarah Gonzalez, Gemma Hackney, Naseeb Ezaydi, Theocharis Stavroulakis, Mike Bradburn, Christopher McDermott
UK healthcare professionals involved in ALS care and service user representatives were invited to participate in focus groups. A range of organizations were contacted including the Motor Neurone Disease Association (MNDA), MND Scotland, British Dietetic Association (BDA), UK Motor Neurone Disease Clinical Studies Group, and Sheffield Motor Neurone Disorders Research Advisory Group. In addition, MND Care Centers, Clinical Commissioning Groups (CCGs), and MND Regional Care Development Advisers were approached. Invitation emails were distributed to contacts, and study information was advertised on Twitter. Convenience sampling methods were used, whereby eligible and potentially interested participants were asked to opt-in based on their availability to attend one of the focus groups, and to maximize sample variation in terms of clinical specialties, job roles and geographical locations.
UK case control study of smoking and risk of amyotrophic lateral sclerosis
Published in Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 2020
Sarah Opie-Martin, Ashley Jones, Alfredo Iacoangeli, Ahmad Al-Khleifat, Mohamed Oumar, Pamela J. Shaw, Chris E. Shaw, Karen E. Morrison, Robyn E. Wootton, George Davey-Smith, Neil Pearce, Ammar Al-Chalabi
The data were obtained from the Motor Neurone Disease Association of England, Wales and Northern Ireland (MNDA) Collections collected as part of the MNDA Epidemiology Study, REC reference 07/MRE01/57. People diagnosed with definite, probable or possible ALS according to the El Escorial criteria between 2008 and 2013 were included (21). Three tertiary centers in London, Sheffield, and Birmingham acted as data collection hubs but people with ALS were recruited at secondary centers such as district general hospitals, therefore these are incident cases representative of the ALS population. General practitioners from the general practice of the person with ALS were asked to invite 10 healthy controls to participate in the study via post. The research team matched people on age (within 5 years of the person with ALS) and gender in a 1:1 ratio. Four hundred and thirteen participants provided informed consent, 405 undertook a telephone interview about their lifestyle including smoking undertaken by a trained nurse. Three participants gave no information on smoking behavior.
How people living with motor neurone disease and their carers experience healthcare decision making: a qualitative exploration
Published in Disability and Rehabilitation, 2022
C. Paynter, S. Mathers, H. Gregory, A. P. Vogel, M. Cruice
Carers’ capacity to support family members was constrained by employment. Two carers spoke of difficulty getting time off work to attend clinic appointments. Furthermore, working full-time sometimes meant not being home when the Motor Neurone Disease Association (MNDA) advisor visited (advisors from the national peak advocacy association provide regular support, information and connect people to services). Not being present for these visits meant missing out on information and education, both of which are likely barriers to collaborative decision making.